– Some clinics allow you to schedule an appointment online, but most require you to call. Due to patient privacy laws and concerns, most clinics will not email with you. After you register, though, you can often communicate through their online patient portal​– When you call, you may reach the ALS clinic coordinator directly, or you may be routed to the hospital front desk. Ask for the ALS clinic, or the neurology department.

Every clinic is different. Some require a doctor's referral or proof of diagnosis before you can schedule an appointment. Most accept Medicare and Medicaid, though private insurance coverage will vary. Once you're talking with the person who schedules appointments for the ALS clinic, ask:​– Do I need a doctor's referral or proof of diagnosis to schedule an appointment?

– Do I need to be registered with The ALS Association or Muscular Dystrophy Association in order to schedule an appointment?​

– Do you accept my insurance/Medicare/Medicaid?​​– Do you have an estimate of what I might need to pay out of pocket?​If you are concerned about cost, ask if there is any financial assistance available and talk with your local ALS Association or Muscular Dystrophy Association chapter.

​– In the time before your appointment, make a complete list of any questions you have about physical symptoms, mental health concerns, equipment, or anything else.

During your visit

– If your appointment is at a large hospital, ask at the front desk for the ALS clinic. If they do not know about the clinic, give the name of the clinic's medical director, or ask for the neurology department.

– During your visit, specialists will rotate to see you individually. Have questions ready for each person, as needed. Do not hesitate to ask anything that concerns you.

– If a family member or friend is with you, ask him or her to take notes. During doctor visits, it can be hard to absorb everything in real time. If you are alone and able to take notes, it will help you remember details between visits.

– During the visit, primary caregivers can ask to speak with the social worker independently to discuss challenges or concerns.

– Before leaving, schedule your next appointment and make sure you have an easy way to contact the clinic coordinator, who is often the nurse or social worker.​After your visit

– Your medical team will meet as a group to discuss your situation. After your visit, they will contact you with recommendations for care and equipment.

– It is usually wise to follow their recommendations. Your team of experts has seen thousands of ALS patients and is making these suggestions to improve your quality of life.

– If you have questions about how to follow the recommendations, call your clinic coordinator.

– You may wish to share your notes and/or the team's recommendations with loved ones so that everyone is on the same page.

– If a question or concern arises between visits, do not hesitate to call your clinic coordinator.

What if there isn't a clinic near me?

Attending an ALS clinic—once every two or three months—may be the single most important thing you can do to extend your life and improve your quality of life. If you are able to make the drive or arrange for transportation, we strongly recommend going.

​If there is not a multidisciplinary ALS clinic near you, there may be other clinics or neurologists at hospitals, private practices, or universities who specialize in ALS. Contact your local ALS Association or Muscular Dystrophy Association chapter to ask about your options. You may also want to search for clinics in neighboring states that may be closer to you.

​If transportation to the clinic is a challenge, ask your local chapter if they have travel grants, resources, or suggestions.

Did we miss something?

Is there an ALS clinic we missed? Is any information out of date? Email us to help keep the directory current. Thank you!